Helen's Roadmap to Thriving Amidst Diagnosis

What happens when your life takes an unexpected turn, and you're faced with navigating the complexities of a chronic illness far from home? Meet Helen, a determined life coach whose journey through an ankylosing spondylitis diagnosis after battling COVID in her late 20s reshaped her world. Tune in as Helen shares her personal story of overcoming the intense physical challenges and emotional upheaval of losing her active lifestyle, all while finding solace in her family's support. Her inspiring narrative is not just about survival but about embracing transformation and using her experience to empower others.

Helen’s relocation from the UK to Barcelona added another layer of complexity to her healing journey, but it also became a catalyst for growth. We discuss the intricacies Helen faced in transferring her medical care and maintaining treatment consistency across borders, highlighting the sometimes daunting, yet vital, task of navigating healthcare systems. Mental health emerges as a cornerstone of her journey, with Helen detailing her use of therapy, coaching, and gratitude practices as powerful tools in managing anxiety and fostering resilience. Her insights offer a roadmap for setting clear goals and cultivating a positive mindset, even amidst overwhelming circumstances.

The episode concludes with Helen's wisdom on balancing personal health and a thriving coaching practice. She shares how she proactively prevents burnout by assessing her well-being and managing energy givers and takers. Listeners can expect practical tips for self-care and a touching success story illustrating the transformative power of coaching. Helen's heartfelt gratitude and insights provide a rich resource for building resilience and finding fulfillment, no matter the setbacks. Join us for a moving conversation that not only inspires but equips you with the tools to face life's unexpected challenges.

Instagram: @helenjonescoaching

TikTok: @helenjonescoaching

Website: www.helenjonescoaching.com 

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Ankylosing Spondylitis Diagnosis and Transformation
• 8:15 Navigating Healthcare and Mental Health
• 20:58 Mindset Shift in Chronic Illness
• 25:49 Balancing Health Coaching and Self-Care

Transcript

Jen: 0:08

Today, on my Spoonie Sisters, we are joined with the incredible Helen who was diagnosed with ankylosing spondylitis almost four years ago. Her journey began suddenly in her late 20s, after a bout of COVID which left her grappling with constant pain, the loss of her active lifestyle and a significant mental health impact. But Helen didn't stop there. She embarked on a transformative journey to rebuild her life, digging deep to adapt and make positive changes. Now, as an associate certified life coach, she's using her experiences to empower others to create fulfilling lives with their needs at the center. Welcome, Helen. How are you today?

Helen: 0:47

Hi, thank you for having me. I'm good. How are you doing?

Jen: 0:50

I'm doing well and I'm so glad to have you here. Me too, it's good to be here. Let's just dive right in. Can you share more about how your ankylosing spondylitis diagnosis came about and what those early days were like for you?

Helen: 1:03

Yeah, so mine came on. I think sometimes with chronic illness, it can be a really long journey to finding out what it is, but in the grand scheme of things, mine came on quite quickly. So the end of 2020, I got COVID for the first time, and it was after this that my symptoms started showing. So I was exercising a lot of the time, playing volleyball and doing a lot of high intensity exercise classes, hiking all of that, and every time I exercised I started getting this really sharp pain all down my left hand side, particularly my back and hip and glute, and down my left leg. So at first I thought, okay, I'm just, you know, over exercising, and so I stopped that.

Helen: 1:47

But as the year went on, the pain got worse and worse and I went through that phase of trying everything I could. So I was, you know, seeing physios, osteopaths, I tried acupuncture, I was Googling everything to try and work out what it was that was causing this pain, whilst taking a lot of, you know, different medications from the doctors. But I didn't really know what was going on. And as the year went on, the pain just got worse and worse and it eventually got to a time where I was unable to really walk and sleep was. I'd fall asleep for like two, three hours because I was so exhausted, but then I'd wake up really early in the morning, around 3am, in so much pain I started each day in the morning around 3am in so much pain I started each day. Basically, my routine was I'd cry, then gradually roll over to get out of bed which took me about an hour in itself and gradually start trying to move a little bit and get that movement there, which obviously we now know is really helpful. But this happened for a period of time and I still didn't know what was going on and it reached a point where I still remember it.

Helen: 2:57

I one morning had one of these terrible mornings and I just rung my mum and just said I want to come home because I live in Barcelona and my parents are based in the UK. So I yeah, I got a flight home the next day and went back to them. I remember their faces actually, as I came through the airport and I was just, I think they were shocked. I was like hobbling along and couldn't really walk. It was getting back home.

Helen: 3:23

I think I'd been in such fight or flight before that. I'd just been going and going and fighting through this and I stopped and couldn't really do much at all, and it was my parents who really helped get things together and get me to the doctors. From there I was referred for an MRI, which then showed up as having severe sacroiliitis. I always say the word wrong, but basically the radiologist rung me and said this isn't something that we should see in someone of your age, so we need to send you to a rheumatologist, which at that point I'd never heard of that word and from there things over the next few months blood tests, etc. It then ended in a diagnosis of AS.

Jen: 4:05

Wow, and I can only imagine that it probably felt like a safe space when you were finally with your parents to stop with the fight or flight and just just be. Am I right?

Helen: 4:16

yeah, yeah, I will probably come on to this later. I I've always been someone who's very good at putting on a smile and very good at keeping going and always giving my all to everything. And it was almost when I got home and I was just around my parents, I think. For the first three days I couldn couldn't even smile and they were shocked by actually how bad I'd got, and I think it was just me finally relaxing and going. Oh my God, I can't cope with that.

Jen: 4:43

And how did your experience with COVID and AS change your relationship with sports and exercise?

Helen: 4:49

Yes, as I said, I was really sporty before. I loved competitive sport and playing a game where you're almost accidentally exercising through playing a game trying to win. And I'm from the UK, so I used to play a lot of netball, which I don't know if you'll know. It's a bit like handball, okay, that kind of sport. And then then, moving to Barcelona, I joined a volleyball team and was just playing a lot of this kind of sport and an AS and getting that. Then basically I had to.

Helen: 5:23

Because of the amount of inflammation and damage that had been done to the joint, I couldn't really do much at all. My mobility was really limited. That next year saw me almost rebuild my body up from scratch. I got a really good physio and he worked with me to work on the really really tiny muscles and movements really internally. This was very boring and almost I remember I made a tick chart that each day I would tick off the physio. That I did just to motivate myself and get myself, you know, feeling like I was making progress with what I was doing.

Helen: 6:00

So, yeah, that first year was just slowly building that all back up again then from there, working out what I could do and adapting what I was used to doing in a new way, for that supported my body.

Helen: 6:13

That was low impact stuff like swimming. I before that actually before I even got to swimming I joined an aqua aerobics class in Barcelona with all these lovely 70 80 year old Catalan ladies who all kind of gave me a funny look like why is she here? But that was a big part of getting me back into just feeling like I was moving my body and exercising again and giving me that enjoyment back um. From there I then started doing Pilates more recently, which has been really really good for me also. Eventually I could get back into hiking, which was a huge part of my weekly activities and enjoyment in my life. So, yeah, but I'm still being honest, I'm still in a place where I can't quite do. I still can't do much that involves my pushing off my left hip and leg, so I'm still not doing quite that competitive sport that I think.

Jen: 7:09

Right. Well, and I think many of us can relate to what you're talking about with the water aerobics. I myself did that as well, and I remember being 32 years old and going into my first water aerobics class with all these lovely elderly women and they all kind of give that look of curiosity as to why on earth are you in this class.

Helen: 7:32

Yeah, yeah, I remember that. Look, these were also Catalan ladies, so I couldn't actually speak the language. Oh, wow so I couldn't explain to them why I was there.

Jen: 7:40

But yeah, just smile. Yeah, yeah, okay. So going back to the beginning of what you were explaining to us, how long did you stay with your parents?

Helen: 7:54

Initially it was about three months, three or four months that I stayed with them. I then went back to Barcelona for about six months and then I came back to them again for a couple of months because I just felt that I needed that comfort during that first year and the different kind of emotions you go through, I guess.

Jen: 8:06

Absolutely, and is it very far for you to travel.

Helen: 8:09

It's not too bad. It's two hours on a plane. Oh, that's not bad at all. Yeah, yeah.

Jen: 8:13

We're very small here in Europe. Once you got back to Barcelona, was it tricky finding the right doctors that you needed to go to once you'd already seen the ones over in the UK. Transferring over to Barcelona was it difficult.

Helen: 8:26

Yeah, it was frustrating because you had to get into the system here as well. So I was kind of balancing both, because I'd already started in the UK and then was also and my medication plan was already being put into action over in the UK, so it was almost that I was behind time here so I had to keep going back to the UK to get that seen to and then transfer it over here at a later date. But the system is really similar to the UK here. So that was good. And I had a lovely rheumatologist here in Spain as well who was really supportive and yeah, I think they adapted well and even you know friends around here said you know, if you want someone to come in with you and help with the language barrier, then we can support you as well. So everyone was really really good.

Jen: 10:16

That's fantastic, Because not all of us have that opportunity.

Helen: 10:19

Yeah yeah, no, definitely. I felt very, very grateful for that.

Jen: 10:24

You mentioned going to a much darker place mentally. How did you begin the process of working on your mental health and adapting to the new normal for yourself, for yourself.

Helen: 10:33

Yeah. So I had never really struggled like this mentally before until until this came, came along and I think before this point I'd used exercise as my form of therapy often and suddenly I was here, unable to even walk 10 minutes, so I couldn't have that outlet for for my emotions. So to begin with, throughout the course of that year, I did therapy and coaching. I think letting yourself actually express the emotions that you're feeling is really, really important when you're first diagnosed. I had to almost grieve the life I thought I was going to have with this new life that I'd been presented with and to get my head around how I was actually feeling about it, because I think my natural way I'd always been is to consider everyone else's emotions.

Helen: 11:28

And it was funny because even the first, the week after I was diagnosed, I actually took myself off to Devon in England for a week on my own, because I knew I just needed to be with myself, because I didn't want to worry or think about everyone else, because that's always where my natural mind would go. So what therapy also allowed me to do was have this actual space where I could say honestly how I was feeling and let out that emotion. So that was definitely the first step, how I was feeling and let out that emotion. So that was definitely the first step. Then I used a lot of journaling at the time and I don't know if you do journaling or anything like that yeah.

Jen: 12:06

It's cathartic.

Helen: 12:07

Yeah, yeah, I'd never done it before this point and I'd heard friends talk about it and suddenly I started doing it. I really saw the value in it and I was able to get my worries out onto paper and all the things that I was thinking and I was actually able to look at them with distance and perspective. And what I do is if the worry was a fact, then I would look at how I could go about addressing that fact and what was in my control to help it, and then if the worry which a lot of worries are was more a feeling or a subjective thought of mine, then I'd look at ways that I could. I could think about it differently and in a way that would better support me. I'm trying to think of what else I did.

Helen: 12:52

I did that, I think, also for me. At the time. I felt very out of control and I'm sure you can probably relate to this. The feeling of you're not in control with everything around you is out of your control, and so setting myself really clear goals and targets and aims each week and each month helped me to actually look forward and focus on what I could control.

Jen: 13:18

Basically, I agree with you and I think for some of us, feeling that out of control, feeling once we've received a diagnosis, it brings a lot of anxiety with it. Yeah, and and we're, we are constantly looking for what we can control and how we can help ourselves, and sometimes there really is nothing that we can do. But it does help to start somewhere by writing it out. Maybe it's tracking the pain we're in, tracking what, what triggers it, what helps it.

Helen: 13:46

So I get exactly what you mean yeah, yeah, exactly, is that it's such an overwhelming feeling and that also was another part of it. Was that that emotions and the feelings of anxiety, like you said, and I also had to kind of learn emotional regulation and how I actually could let out and create space for those emotions the emotional? I had to learn how to create space for those emotions and actually process them myself and understand them in my own body, which, again, is something I don't think I'd ever really done before, because I'd just gone and exercised and gone for a big walk or gone seeing friends and had a night out, something like that to process my emotions. But this was all suddenly something I had to do on my own and I think that was a big part of it as well.

Jen: 14:33

What do you feel were some of the first habits or changes you implemented that made a significant difference? I mean, you're talking about journaling, so I'm assuming that's one of them. Are there other habits that you started to implement?

Helen: 14:44

Yeah, journaling definitely was a big one. A big habit that really helped me at the time was gratitude and, each day, forcing myself to start my day by just writing down three things, whether they were things I had or things that my body could do, just forcing my brain to focus on three things that were going well in my life. Okay, the first time I didn't notice much difference. Maybe the second time, maybe not the third time, but building this as a consistent daily habit. This really really helped me to just pull my brain, not even necessarily out of the negative, but because it was paying so much attention to the negative things, it was only fair that I also let it pay attention to the positive things. So it helped just create more of a balanced mindset in my day.

Helen: 15:37

So and that's something I've continued throughout the years and I don't do it every single day at all and I definitely have periods of time now, for example, the last month, I haven't done it a lot, but over this whole three or four year period I've consistently definitely involved gratitude, and that was something that was really new to me. What else did I do? The process of I think I mentioned it earlier but the setting, planning out my week and actually setting targets and goals was another habit that I built at that time, because that really helped me to get clear on what it was that I was working towards and making a plan each day for how I was going to achieve those things. So just building that sort of plan into my week really, really helped Definitely.

Jen: 16:22

What did you?

Helen: 16:23

do when you were first diagnosed.

Jen: 16:25

Oh gosh, I don't think I did anything super healthy for myself when I was first diagnosed. I think that I was convinced that I was going to be crippled and wheelchair bound, because that's kind of what we saw. You know, if anyone was diagnosed with any form of arthritis, that is kind of what we were taught growing up. That's what it does to you, and I don't think there was a lot of information that there are many forms of different kinds of arthritis and that they they attack all ages, that we are not all 90 years old and and barely able to walk, and so it was more of the one day I was planning to join a roller derby team and I was hiking with my family and doing all the fun activities to the next day I was convinced that I was going to look like I was 90 and barely be able to walk, and so it was a lot of.

Jen: 17:10

The woe is me, and I don't know what finally pulled me out of it. But one day, finally, I was like no, no, no, no, I still have so much to offer, and that's probably what I tell people constantly is that they do. They have so much to offer. It might look differently. You might do things differently, you might not enjoy the things that you loved the same way before and you might have to learn new things to enjoy, but you still have something to offer the world and I guess I look at it like what has happened in our lives has made us better, more compassionate people. We're more understanding than we would have ever been before. Yeah, I love that.

Helen: 17:46

I love that and I don't know what got me there I had that phase as well to then actually realizing that you I mean look at what you're doing now and helping the community and all of the things that it has given you, I'm sure.

Jen: 18:17

Well, I think when there's not a lot of information out there, we run with the intrusive thoughts in our mind. We, we start to imagine our lives going downhill. Our minds can be a scary thing, right and and, without someone to redirect us or without the skills implemented, or I don't know where I'm going with this but we, we start to go downhill mentally and emotionally and I see it happen with so many people and I wish that I had a great way of telling people how I pulled myself out of it. I don't honestly know. It just kind of happened over time and I don't know if it was through the support of family and friends. But one day I woke up and I was like this is it. I'm sick of living like this. This is not my life I want my life back.

Helen: 19:01

I love that. I love that.

Jen: 19:03

Thank you. As a life coach, how do you help others who may be struggling with chronic illness and its impact on their identity? And is that self-compassion and understanding the way that we talk to ourselves and the stress that that can cause internally things?

Helen: 19:18

with managing arthritis is stress management. So people imagine stress being a busy life, you know working, kids, job, everything that you've got to do and manage and not doing too much, which obviously that is a big part of it. This is stress, but also what is stress is how our internal dialogue is and what we're telling ourselves about what this all means about us, about what other people are saying about us, and a huge part of my coaching with my clients is getting really helping them, first of all, get clear on how they're speaking to themselves and then learning different ways and techniques and tools that they can use to be much kinder to themselves and to start treating themselves like they would their best friend or their partner or their child or whoever it is, because I guarantee you, all these people with an autoimmune disease are kind, caring people that have always gone out of their way to help others, so it's about bringing them back to how they apply the same, but to themselves. So I almost think that's the big shell of what we do. You mentioned identity, and that's a huge part of chronic illness is suddenly this shift in who you are as a person and what we make sure.

Helen: 20:59

What I do with my clients is learn to get really clear on your values and how you actually want to show up each day and in everything that you do.

Helen: 21:10

Because they say that values are like a compass, whereas and they can guide you, whereas goals are the direction.

Helen: 21:18

And what I mean by getting clear on your values is that there are lots of external factors with chronic illness that can come your way, that you don't plan for and you don't prepare for, and this means that goals might have to shift. But what you can do is, by getting clear on your values, is show up as you always want to and just adapt them according to whatever's going on externally. So giving giving example, say, let's say, joy is a value of yours and you've planned this great weekend with your friends, you've put a great dinner, a restaurant for dinner, and then you're going to a gig after, but a flare up comes on and you're not able to do this by following the value of joy. You can then adapt the plan to say, right, let's have a movie night and stay in and watch a film altogether, because that's a little activity that still brings you joy. So you're still following that identity and that value of bringing joy to your life, but you've just shifted it based on whatever's going on for you.

Jen: 22:20

I think that's a really important point. The mindset shift can be everything. It can really turn your entire day around.

Helen: 22:27

Yeah, it's the thing that you actually and it's the thing that you have the power over, that's actually yours to take control of.

Jen: 22:35

Do you have a few tips that you would give to a person listening right now about how to shift their mindset?

Helen: 22:42

Yeah. So first of all, get very aware of the language that you're using. Language is so, so important and I hear so often with my clients. I should be feeling this. I would have done this. What else these shoulds can be so damaging to us? And getting really, really clear on that language that you're using can help you, first of all, to even recognize where you might be saying things that actually aren't going to support, you aren't going to help, you are going to cause that internal stress inside you. Another way is and I love writing things down because I think it takes the power of them away from inside your head and gets that perspective and distance. So actually do an exercise where you go through and you write down some of the thoughts that you've been having recently about your condition, about yourself and how you're living, and just take a step back and look at them and then just ask yourself would I say this to my best friend and I can guarantee you you know.

Jen: 23:42

Never, we never would. We're harder on ourselves than we are on anyone else, so much harder, it's horrible.

Helen: 23:48

It's horrible to see how we speak to ourselves. So this exercise can doing that, can help you become aware of it and then actually looking at what you're saying to yourself and thinking what's a more compassionate way of speaking to myself or what's a way that I could speak to myself that is actually going to support me and help me to grow and get better and to feel better whilst I manage this really difficult condition.

Jen: 24:11

To go along with that. What advice would you give to someone that's newly diagnosed with something like ankylosing spondylitis or another chronic illness?

Helen: 24:20

What advice would I give? I think, first of all, there is so much worrying that goes on when you're living with some kind of chronic illness and I see it with my clients all the time and that is that worrying and catastrophizing about the future. So my number one piece of advice is to actually trust yourself and have faith in yourself that you can handle what's going to be thrown at you, because you are handling it right now. You're going to only develop more strength and ability to handle what comes at you in the future, because I think that can be such a detrimental part of the present is that worrying and overthinking about the future.

Helen: 25:01

I say this, I do. I do this myself and it's something I am regularly working on. I'm still not quite there, but that would definitely be my first piece of advice. And secondly is get support, whether that's from your friends and family and loved ones, from a therapist, a coach, a physio or online community, anything like that. Just get support, because you've probably given so much to so many people around you, so please let them give the support back to you as well in the moment, because you're going to need it and it's only fair that you let them support you as well well said.

Jen: 25:40

I hope everyone's taking notes right now. If not, you need to go back and listen to this episode again and take notes and then reach out to Helen All right Now. How do you personally balance your own health needs while supporting and empowering others through your coaching?

Helen: 25:56

Yeah, it's a good question. I've got very good at proactively planning my weeks, so I tend to, on a Sunday evening or Monday morning check in, do a weekly check-in. I call it where I check in with myself and how I'm feeling, how I'm feeling physically, emotionally, spiritually, all of those different ways and how I'm feeling, and based on this because it fluctuates, right, so it can be different for different weeks, weeks I then plan my week accordingly and I always make sure I prioritize rest and regular breaks and make sure that I'm not overdoing it, because that's actually been a real, real test for me is pacing and again, something I'm still still practicing um, no, something that I'm still learning but it's really important to pace yourself because you don't want to burn out. Because I also know that if I want to give my clients the best coaching and support I can, then I need to be the best I can be as well 100%.

Jen: 26:59

Do you have any tips on pacing to share with listeners?

Helen: 27:02

Yeah, tips on pacing. It's kind of how I just described my weekly check-in. What I think pacing is is it's, first of all, becoming aware of how you're feeling right now. So, if you can building this into your morning or daily routine, just asking yourself, how am I right now and, based on this, what do I need today? And then ensuring, even if you don't feel like you need it, that you plan in some kind of rest each and every day. And rest doesn't necessarily have to be lying down, sleeping, napping, anything like that. It could just be, for example, making sure you've got 15 minutes where your phone is over on the other side out of the room and you're just sat down with your lunch, eating it mindfully, or something like that, something where you're not draining your energy in some way or another, and that that comes me on to brings me on to phones. Try and definitely have some period of your day where you just disconnect a little bit from your phone, because this is such, can be such an energy drainer for people absolutely.

Jen: 28:11

We are so used to being on the go and being available to people at all times and we don't have to be available at all times. We need to fill our own cup back up and you know, for those that talk about the spoon theory, you need to fill your spoons back up. That, for everyone, may look differently. Like you mentioned, it could be sitting down and mindfully eating your lunch without, without other distractions like a phone or a television or anything like that. It can be something as simple as lay down on a couch or sit in a chair for 15 minutes just to close your eyes and relax and listen to some music. It can look different for everyone, but it's so important that we implement that into our lives.

Helen: 28:50

Yeah, it's so important that's an exercise I always do with my clients is an energy getting clear on what their energy givers and energy takers are, because, as you said, it's different for each person. So, you know, we can't just say this is what's going to give you and drain your energy, but it's getting really clear for them on what theirs are in their life and because that's what a lot of people don't actually even realize what is making them feel energized and good and filling them up versus what's draining them. So getting really clear on that is also so important. So that's an exercise that your listeners could go away and do and just ask themselves what drains my energy and how could I do less of this, versus what fills me up, what makes me feel good and energized and how can I do more of this.

Jen: 29:41

Absolutely. Can you share a success story or a particular meaningful moment that you've had as a life coach and you don't have to bring anyone's name up, but is there a moment that stands out to you?

Helen: 29:52

Yeah, I'm just going through my clients in my head, right. I mean they've all been great. But there was one who I worked with her about almost a year ago now and it was six months after the coaching had finished. She reached out to me and just said I just wanted to tell you that I genuinely don't know where I'd be without your coaching. She said my confidence has grown in who I am, how I feel about myself, because when I was first diagnosed, and even for a year or so after that, I had completely lost faith in who I was and my confidence and you know, my whole community around me I'd almost lost touch with because of that lack of confidence. And actually that's what she gained through through the coaching. Yeah, I think to know that that's what she's gone on to have and hopefully this, the tools and the skills. I think to know that that's what she's gone on to have and hopefully this, the tools and the skills.

Jen: 30:50

I love moments like that. Well, I thank you for your time. It has been such a pleasure to have you on and I'm so excited for all of you to hear her inspiring story and all of her little nuggets of helpful information. I will make sure that we have all the helpful links in her show notes so you can reach out and connect with Helen. Once again, thank you so much for your time and it was a pleasure. All right, my spoonie sisters, until next time, don't forget your spoon.